MY STORY: A Rare Condition That Once Restricted Me to the ICU Has Now Given Me Reason to Live.

By Chetan Mallik

Rare is an interesting word. I don’t think there is any other English word that emanates such polarities of emotions. A word that at one point can make you part of an exclusive club and at another, also has the potential to leave you desperately lonely. I was destined to be the later till I chose to be the former.

On April 11, 2011, I was diagnosed with a rare medical condition called acromegaly. Simply put, a benign tumor piggybacking on my pituitary gland was causing overproduction of growth hormone. As a result of which I was left with several changes in my skeletal features but more importantly with aching joints, high blood pressure, increased fatigue, high cholesterol, borderline diabetes, obesity, and depression.

It took me almost nearly 18 months, which included a surgery, a month of radiation, and medical therapy, to normalize my hormone levels. However, this story is not about my fight with this condition. What bothered me was the complete lack of Indian context and positive stories from around the globe of people turning it around to live fulfilling and positive lives. As I searched through tons and tons of web content, I was convinced that this orphan disease has chosen me to tell its story.

The medical condition became the purpose of my being.

However, the story needed some element of surprise to make the condition go beyond medical papers. I found the perfect companion in my pursuit of becoming fit: To imagine a person with acromegaly completing a 100-km cycle ride or a triathlon or running a half marathon seemed a bit far-fetched at the first go even for me. After taking part in multiple fitness events and diligently following a stringent routine, I finally launched #LifeWithAcromegaly on my social media accounts in February 2016, after completing a novice triathlon.

It was also the first time I came out in the open with regard to my life with this rare condition and how I manage my life with it.

Through a series of tweets and posts that followed all through the year, each time I completed a marathon, a long-distance cycle ride, an obstacle race or a triathlon, I started using the hashtag and also on some occasions posted humorous notes on the signs to know whether someone had the condition or not.

What followed was something beyond expectations. Little did I know that for someone looking for that one glimmer of hope on a bad day with acromegaly, my posts could be just the dash of positivity they needed to look at life differently. I am currently in touch with multiple patients across the globe (including couple of them in India), sharing my learnings on treatment options and also my experiences post op and radiation.

Life is definitely beautiful when shared.

While #LifeWithAcromegaly is gaining ground each passing day, what gives the biggest high is also the fact that through my fitness pursuits I have been able to inspire a lot of friends, colleagues, and family members in pursuing a healthier lifestyle. My story from fat to fit to fast, after all, has unfolded right in front of their eyes. A medical condition which once made me look at the roof of the ICU for four days, has now given me the reason to live.

Interestingly, during my journey with the medical condition I had stumbled upon a book titled Alone in My Universe, compiled by Wayne Brown, which presents a series of writings from patients suffering from acromegaly. I never got to ordering the book since I have always believed that a lonely fight is not the perfect strategy.

As I started sharing my world with others, life started taking the front seat in my #LifeWithAcromegaly